Wednesday, January 16, 2013

Not crazy, not alone, and not sick forever? Three things we're definitely "NOT"!

There are two questions I never ask my architect: Are we driving you crazy and are we still your favorite clients? I don't ask because from time to time, we probably are, and we're probably not, respectively. But alas, that's the nature of working together on a major house renovation. Things are bound to get hectic, and as first-time renovators, Johnny and I are bound to ask silly questions, waste some time, and second-guess ourselves. In fact, I suspect my architect's answers to the questions above change on a daily basis, depending on the voice mail messages from me in his in-box, and the number of emails we've exchanged before noon. Thus, I prefer not to ask, so then I don't know. For sure.

There are a few questions I no longer ask myself about lupus, too. Not so much because I don't want to hear the answer, but primarily because I have to trust myself that I already know the answer. Here they are:

1) Am I crazy?

Of course not. It's lupus and its symptoms that are crazy...not me. The way those debilitating symptoms, painful side-effects, or drastic medications make me feel shouldn't be ignored, much less denied. They are absolutely, positively real - and I shouldn't pretend otherwise. For instance, was I crazy for feeling so down and out about my hair loss? No way. I'm wasn't imagining it, and it WAS a big deal. Was I crazy for feeling nervous, a bit reluctant, and maybe even a little embarrassed about approaching my boss regarding an accommodation at work? Of course not. I think that's one of the hardest things one has to do in regard to a chronic illness. The task shouldn't have been underestimated. Am I crazy for feeling anxious about starting a new medication? Are you kidding? New side-effects, new limitations, new requirements - you never know what you're going to get, and that can be, ahem, a tough pill to swallow. (Come on now, you knew where I was headed!)

2) Am I alone?

Absolutely not. I've met and talked to enough lupites around the world to know that I'm not the only one whose life is chock full of lupus trials and tribulations. It can be tough to negotiate the world of a chronic illness. But the consoling news is that for almost every issue we find ourselves up against, there's someone else out there who's felt the same way or experienced the same thing. The ideal situation is to connect with those people. But until them, you just have to believe that you're in good company.

3) Am I going to feel like this forever?

No way. Emotionally, physically, mentally, spiritually - I've changed one hundred and eighty degrees, three times over since being diagnosed with lupus. While we can't necessarily predict symptom activity or the trajectory of a disease, I believe we can better prepare ourselves for the physical and emotional changes our body experiences, thus arming ourselves with positive, productive methods for combating our disease. The goal? To courageously and definitively live well, despite lupus.

13 comments:

Anonymous
said...

Sarah-thanks for the positiveness. How do you stay so positive? I just received an email where Dr. Mark Hyman talks about how negative emotions can become trapped in our cells....there is a video on it. I am going to view it later,but is sounds very interesting. I have always been somewhat of a negative person-because when something bad would happen in my life I would focus on it too much and consider myself unlucky. Granted--I have had many misfortunes throughout my life and i just wonder now if my negativity has contributed to any of them? How do you stay so positive and are able to "plan" your future" when lupus is so unpredictable? I am no where near where you are--havent even been dxd yet, and my symptoms are mild compared to others--I have no major pain at all...I guess I should be thankful for that....it is my hair loss that is currently causing so much anxiety.

Sarah - Thank you for posting this; it's wonderful to hear we're not alone! I was actually wondering if you could give me some advice. I am looking into running a half marathon and I was really hoping to turn it into a fundraising thing. I was diagnosed a year and a half ago and I'm a 21 year old college student. I plan on contacting family and friends but I wanted to get it out in the blogosphere, which is something I know nothing about. If you have any advice or ideas of where to start I would greatly appreciate it. Sorry for posting on this thread directly I didn't know where else post. Thank you for your time and inspiration!

Andrea - Thanks for stopping by, and congrats on your fundraiser! I think it's a fabulous idea, and I'd like to turn you on to a couple of people who have done exactly what you're proposing. When you get the chance, send me an email at sara@despitelupus.com, and I'll pass on the information. Look forward to hearing from you!

Sara,In the last year, I was diagnosed with thyroid cancer and Lupus at age 33. It was devastating. I found myself angry about all the things I could no longer do. But, when I found your blog and book, I felt that I had some control again. You have given me much needed encouragement. I want to say THANK YOU from the bottom of my heart!Aimee

Sarah - its a miracle that people like you still find the courage to smile and keep positive. I have been permanently attached to my partner Lady Lu (lupus) for such a long time that sometimes it takes me forever just to wake up and keep moving everyday. More power to you and your blog. I hope you can visit mine and leave a comment. Its hard for a 50+ year old fogey like me to type at times.. :) --- <>

Lauren - I'll have to check out the Dr. Hyman piece...sounds very interesting! I can't speak to the scientific repercussions of keeping negativity around, but I know for myself that when I focus my energy on affecting change, attempting to improve my situation, or finding ways to contribute to a solution...life seems a whole lot easier to swallow. The sadness or unfortunate-ness of lupus is just that...sad and unfortunate. Dwelling on it(what I call "grieving") doesn't prove productive for me. (For 5 minutes - yes. It's essential to grieve. But after about 5 minutes, I have to change my tune!) I need to be able to feel like I'm doing something to make things happen. Things like keeping a chart of my symptoms so I can see patterns of the disease, or organizing my meds so they're easier to take. Or even counting my hairs during bouts of hair loss. It just helped me focus not on the crummy part of lupus, but on the part that I can do something about. And as I said - don't underestimate that hair loss. It can be a real bummer!!! I remember going out and getting a cute new hat when my hair loss was really bad. Just covering it up and making myself look a little stylish made me feel like I was in control. Perhaps that will give you a little boost, too!

Aimee - What a wonderful comment! Thanks so much for sharing, and I appreciate hearing that you've found my book and blog to be helpful. It makes writing my posts so much easier, knowing people are reading! :)

I was in my 50s when a Dr. finally found out what was wrong with me my constant companion Lupus.I hv good days and bad weeks up until a month ago I took care of a lady 98 years old Lupey didnt stop me she went into a nursing home . I cnnot take any meds for my friend so I do what i can with what God gives me and any Homopathic that I get a hold of and I def know Im n ot alone thanks for sharing and goGod Bless all my Lupus brothers and sisters Im now in my 70s never give up

Hey im 17 and was diagnosed with lupus at the age of maybe 10 or 11. Nobody ever told me what it was they just said I had it so I got really down and stopped trying. I dont do any sports or anything now I prefer to work because that was my solution to it. I still dont fully understand lupus but I have recently discovered there are a lot of others living with lupus. You do seem to have a very positive out look and its great. I usually just pretend like I dont have anything wrong with me until I feel the pain from the lupus. But again, thank you for helping us with lupus.

To the 17 year old--i wish you the best and encourage you to continue working, if that's working well for you. lupus IS an enigma, but there are alot of people who are trying to figure it out just like you. Definitely stop back by...i'll be talking about my lupus discoveries week after week!

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.